Saturday, July 24, 2010

A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel pattern.

Just a snippet, more at the link.

HOW many times do I need to tell you, Science, that YOU SUCK. First of all, if you click on the link to the study (I didn't, but I have smart friends who did! :) ) you'll learn that there were 14 kids in this tightly controlled study. (Hey, I'm just wondering, how many kids were in Wakefield's original study? 12? Isn't that one of the things people use when they list the reasons he should be discredited? I'm just curious).

I could go on another rant about this, but I've decided just to quote my incredibly good friend who responded to this article with the following: "Well, those researchers can kiss my lily white ass be/c (my kid) is allergic to dairy (and this has been replicated every time he's had an allergy test), so removal of casein has helped him."

Exactly. And I, for one, would like to see those researchers kiss her lily white ass. Okay, maybe that's a personal thing I shouldn't share....

All the study says is that the results don't support the diet. It doesn't rule out the diet from working altogether. Wakefield was attempting to promote something much more definitive, which was why his small sample size (I guess he didn't want to spend TOO much time making up data) was inappropriate. The benefit of investigating diet is that kids with food allergies are more likely to be catered to better, even if a perfect "autism" diet is never found.

I just find so much about this study to be disappointing. The researchers chose children who did NOT have gastro issues, and then they claim that the diet doesn't improve bowel problems. It seems to me that if you want to study the effect of diet on bowel problems, you might want to include kids who have bowel problems -- you know, like chronic diarrhea or constipation. It also sounds to me like they didn't test for intolerances, just allergies. It might have been useful to get a large sample of kids on the spectrum and just do the blood work to determine if they are gluten and/or casein intolerant. Just the results from that would have been interesting, IMO. Based on the results, test your diet on the two groups -- those with intolerances and those without -- and then see what happens.

The sad thing is, this study has been anticipated and talked about for years. I remember hearing a year or two ago about the Rochester diet study and how important it would be. And then I see that all of 14 kids were involved and that the researchers didn't do much in the way of "controls" on their subjects. But the headlines read that the diet doesn't work. I think the NIH should ask for its money back from the research team. ~ Ellen

I have never been on the Cure Bus and have always had my skepticism about "the diet," but the article does not at all clearly state that this diet works for some, but not all. The headlines scream that the diet does not work at all. True, it does not change behavior in all autistic kids, but a portion of parents do see significant positive changes.

In all of my experience in the online Autism Wars, I have winessed many bitter battles, but never once have I seen anyone claim that this diet works for all autistic kids. In fact, merely from my participation in the forums (I have walked among the frothing mob for years, know them well) I could tell you what great lengths a parent needs to go to in order to put this diet into action. Nobody has ever positioned the diet is a cure-all, but instead a help-some.

So this long awaited study comes along and the results reflect exactly what the parent forums have been reflecting for years - that the diet works for a small percentage, but not for most. The headline screams "Tightly controlled study saw no benefits for sleep, attention and bowel function" and the article does not at all mention that the diet may show significant benefits for some. My own perspective is that the diet would improve "Sleep, attention and bowel function" in the autism group at the exact same rate that it would improve "sleep, attention and bowel function" in a typical group. But the article does not even begin to mention that even one child would show improvement with the diet. Many typical people show improvement on this diet, as would any percentage of people with a human body, including autistic kids.

What the frothing mob gets so up in arms about is the constant dismissal of their real life, intimate experience and the constant negative portrayal of all things autism in the media. This study is a double whammy - dismissive (flawed goes without saying) and a write up that pretty much tells us all that nothing is to be done. As usual.

I have never been a pro-cure advocate - quite the opposite, in fact. I find myself ever more appreciative of this unique human parenting experience. But I know the anger at "Science" of which this blogger speaks. "Science" has not one iota of an inkling where autism comes from or how to respond to it. The science of autism is so dismal and misguided that I have long since refused to contribute to organizations that spend their money in that effort. For all of the pleas and promises of autism research, we have yet to see one solid, helpful (or even interesting) study regarding where autism comes from or how to respond to it. To this blogger's cry of "Science fail" I would only add "Media fail" - once again.

Hopefully, this is just a preliminary study to get a grant for a larger study. One percentage of the population has autism and they decided to study 22 kids? Only 14 completed the study! Clearly what is needed is a multi-center trial with greater numbers. If they had larger numbers, then they can do statistical analysis on subsets such as children with diarrhea. They also didn't randomize the children. They put everyone on a GFCF diet for 4 weeks and then gave some of them snacks with gluten and casein. Some aspects of the study were well designed, but overall, it was poorly executed.

This study was so disappointing Really I am just so annoyed with this whole mentality that a lot of the media has taken

( Annoying attitudes from the media and science like - "everything alternative like control diets etc are bad", "vaccine must be used with the same schedule or you are putting the public at risk etc etc .. "

But oh BTW we have noone has any real idea why autism is increasing at the rate it is -

But the media is happy to constantly complain about the cost to the school system etc of raising autistic kids )

Its a shocker that the University of Rochester treat this reseach as valid and reliable ( valid is defined that if the study were to be repeated - same results would be achieved - a sample size of 14 would make the study invalid )

Fragile X and Retts are genetic and account for a very small subgroup of people diagnosed with autism. For the rest, cause unknown, but it stands to reason that genetics could be involved. DS might like to do a little research on epigenetis, which seems to have significant implications for autism (environmental factors and genetics go hand in hand).

Behavioral interventions are pretty much all we have to go on right now, but they aren't effective for all with autism, and if there are medical (or other) interventions that could be helping some people with autism, that would certainly be worth knowing. That's why the Rochester study is disappointing-- a squandered opportunity to see if a dietary intervention could improve the quality of life for some people on the spectrum. ~Ellen

DS...seriously? That's it? End of story? Yes, Autism is a highly genetic disorder but there may be environmental factors as well. Identical twin studies show a concordance rate of 85%, not 100%. We need to identify the genes, their function and how they relate to one another. And ABA is all we've got but it's completely inadequate. Kids do get better with ABA but Autism still rules their lives and the lives of their families. We can do better. Especially for a condition with such a high prevelance.~Purvi

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Who the hell do I think I am?

Snarky, profane Mama to 2 boys: Child 1 is autistic and Child 2 OMGISN'T. I write about... stuff. Sometimes. Other times I write about other stuff. A lot of the time I don't write anything at all. Sometimes I draw really bad and stupid pictures. I'm not just saying that, I mean, they are just awful.